Thursday, November 5, 2020

Breaking the Ground

We are still hanging out at the hospital... 

At this point we will be here until at least next Monday.

Wednesday was a rough day - breakthrough pain and interrupted sleep have worn him down.

For those who want a visual .... here are some pictures.... for those who don't... sorry!!!

Yes, that fixator is screwed right into his bone!

It it stabilizing Aaron's arm making it easier to do therapy.

As we talk to the doctors, I am gaining a bit more knowledge of the ins and out of this surgery. 

During surgery, when they bent his elbow and his skin began to RIP  - they had to take a piece of skin from above the rip and drape it over his elbow and sew it on. 

The skin they removed is exposed without anything to cover it up, so he has a wound vac to keep it from getting infected. In two to three weeks they will do a skin graft to cover the open area. In the meantime he gets to cart around the wound vac.

There is no guide book for this so everything is a bit of thinking outside the box.

This surgery is truly a groundbreaking one for other children with arthrogryposis. What they did with his elbow was innovative and amazing and they could not be more pleased with the outcome. It is truly going to give hope to many and for that we are excited.

What happened with his skin has also been a huge learning curve. They are already figuring out what they will do the next time. 

I love hearing that.

I love that this was not a dead end but there will be a next time and another next time and for each next time they will modify and refine and smooth out the procedure. 

We know so many children in this small world of arthrogryposis who have unbending elbows. Aaron's first time is their future and hope. 

But for Aaron - breaking the ground has been a bit sorrow-filled. At this point - we don't know if he will come close to his heart's desire - to get his hand up to his face. 

The next weeks/months are going to be so hard on him. He faces two more trips up here - hard hard therapy every single hour, every single day and a long healing process for a dream that just may be out of reach.

I continue to be so proud of him. He's working so hard and trying so hard to be brave.

Please keep praying for him. It's not over and we are not giving up. His doctors are hopeful that in the next surgery the skin flap they used to close the area on his elbow will stretch and allow them to again get his arm to 130 degrees or at the least 110 degrees.

That's our hope too!!

And definitely Aaron's!!!


  1. I don't know you or your family but I've been following your story since you were out of the country to adopt a girl the first time and I've been so inspired by your family and your children. Praying for Aaron from Connecticut! What a brave and strong kid (and parents!)!

  2. We are praying for you Aaron! What a tough guy God created you to be. (we saw the pics!) Can't wait to have you back home again soon.
    Ephesians 6:10..."Be Strong in the Lord and in the strength of His might."
    Love your friends, The Young's- Brian, Valerie, Aly & Colette

  3. I'm praying for him and your family! Your son is amazing!

  4. Thinking of and praying for you and Aaron, and Rob and the other kids too. What a blessing Aaron's bravery will be to those who come after him as doctors and other specialists learn how to provide even better care and procedures. -- MayLynne


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